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Help need advice

Discussion in 'Greetings and Introductions' started by kimbe, Jul 14, 2019.

  1. kimbe

    kimbe Type 1 · Newbie

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    Son is 17 and having a hard time with the whole diabetes thing ,he was on the libre but he found it was giving very wrong readings now he hates it we were giving it on the NHS and self funded for a while now he wants to try the dexcom ,don't know what to do been in contact with hospital and was told he is in diabetic burnout no idea so all advice would be great xxxworried mum
     
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  2. Guzzler

    Guzzler Type 2 · Master

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    Please wait on, it has been a lovely day and the forum has been quite quiet but I am sure that parents of those with T1 and those who remember well what it is like to go through burnout will answer and offer support very soon. I wish I could help but I have no experience with this but I do know that being 17 is a hard enough time of life for anyone without the stresses and strains of diagnosis. I wish you both the very best of luck.
     
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  3. Scott-C

    Scott-C Type 1 · Well-Known Member

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    Hi, @kimbe , yes, burnout can be an issue with teenagers - teens want to be masters of their universe, and they get annoyed when things like unpredictable T1 takes that sense of control away from them.

    How to give that sense of control back? Difficult question.

    Sometimes just getting older does it. I was dx'd at 21, am now 52, things which would have annoyed me at 21 are now just, meh, whatever.

    None of us have perfect control, maybe you could try to steer him into looking more at the time he is in range, which can be surprisingly high and gives reassurance, and looking at the out of range times as learning opportunities to figure out why that happened so it'll pan out better next time - there's lots of books about this which I'll mention shortly.

    He's got libre on script. Many would kill to have that. You can certainly ask about getting dexcom on script but it's a much higher hurdle - him just wanting it because he doesn't like libre will not be enough.

    Libre can be inaccurate, there are ways of dealing with that, but the online community are more and more buying transmitters which sit on top of the libre and send bg readings to a phone app every 5 mins.

    That system lets us type in actual bg readings which makes the libre output very accurate (mines are frequently only 0.1 to 0.4 out). It makes it more or less the same as dexcom, get hypo alerts and predictions about where my bg is going.

    The MiaoMiao transmitter for this rig is about £160, one-off cost:

    https://miaomiao.cool/

    The app for android to use with it is xDrip+, free:

    https://github.com/NightscoutFoundation/xDrip/releases

    https://jamorham.github.io/

    Sticking an MM on top of libre and running it to xDrip+ gives a massive amount of control back: we can see in real time how bg is moving, and gently steer it to keep in range so we don't have to deal with messy hypos and hypers so often.

    It is the constantly having to deal with hypos and hypers which leads to burnout. Take that away or reduce it with some bling tech like libre, MM and xDrip+ and this game becomes way easier. Sure, it's T1, so there will still be random fliers, but overall, it works well and makes T1 much less of a hassle.

    Couple of books to look at:

    Sugar Surfing, Stephen Ponder - he explains how to use cgm and there's a chapter or two on how to steer youths into "accepting" cgm and T1. He's T1 and an endo, and takes part in American diabetes camps for youngsters, so knows the score with this stuff. A lot of the book is technical stuff about cgm and T1, but he's also got a pretty strong upbeat message about the philosophy of living with T1: here's a problem, how do I fix it.

    Pumping Insulin, John Walsh - mainly aimed at pumpers but there's a fair bit in there about managing T1 with youths.

    Think Like a Pancreas, Gary Scheiner - he's another T1 who also happens to be an endo. Good reference book, and like the others, upbeat on "can do", instead of "can't do".

    I suspect your lad isn't familiar with things like basal testing, pre-bolusing, insulin stacking and monitoring iob. Those are hugely effective techniques in "taming" T1 and making it way easier but the way T1 education works means they are often overlooked. The books above discuss them, and there'll always be folks on this site who'll pitch in their tuppence worth if he has any questions.

    Good luck!
     
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  4. Bon83

    Bon83 Type 1 · Well-Known Member

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    I do consider myself fortunate to not have become diabetic until I was 30 ish. However who knows. I sympathise with your son as I too had a big fall out with the libre - I bought one to use on a run and it gave me really high readings which were incorrect. I don't know everything about you and your son but I know how mad that libre situation made me. Sometimes when we think something is the answer to some of our problems it can be hard to take. I found getting back to basics of testing and correcting with my meter helped me. Look after yourself too
     
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